1. < MAC & Bronchiectasis

Bronchiectasis: New Diagnosis

Posted by navylady @navylady, Jul 26, 2018

New to your group. Non-smoker. Pneumonia x6 in 12 years, double pneumonia twice. Was diagnosed with chronic bronchitis and COPD for past 15 years, now pulmonologist based on x-rays and MRI has diagnosed no COPD, yes bronchiectasis. Take advair 250/50 twice a day. Past ten days I am increasingly gurgling, wheezing, some chest pain. I have recently moved to Florida which I like but am having long wait times to get into see a family care NP who can hopefully refer me to a pulmonologist. I walk 20-30 minutes a day. Any ideas how to manage this now. Am worried about getting pneumonia again. I went to one walk-in clinic at a reputable hospital. They literally did nothing except take x-rays. Didn't even talk to me. Just billed $2000+ for x-rays. Do I try another walk-in clinic. I feel very alone right now with this chronic medical problem.

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tdrell | @tdrell | Mar 26, 2019
In reply to @pfists "@tdrell My last bronchoscope showed a really high eosinophil count. The pathologist called my pulmonologist and..." + (show)
@pfists

@tdrell
My last bronchoscope showed a really high eosinophil count. The pathologist called my pulmonologist and told him it was one of the highest he ever seen. So not really not good to impress the pathologist in not such a good way.
I have lots of allergies to dust mold pollen. There are a number of injections for extreme asthma I'm just not sure I want to mess with my immune system with the injectables.
Shari

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@pfists....so when you had bronchoscopy....pulmonologist must have taken fluid or a tissue sampling...which in turn the pathologist examined under microscope....most interesting for sure....l wonder if it is a routine part of a bronchoscopy????hmmm...something for me to google. you sound like you have thorough dr's….where are you state city wise??if l may ask terri and tdrell

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1 reply
pfists | @pfists | Mar 26, 2019
In reply to @tdrell "@pfists....so when you had bronchoscopy....pulmonologist must have taken fluid or a tissue sampling...which in turn the..." + (show)
@tdrell

@pfists....so when you had bronchoscopy....pulmonologist must have taken fluid or a tissue sampling...which in turn the pathologist examined under microscope....most interesting for sure....l wonder if it is a routine part of a bronchoscopy????hmmm...something for me to google. you sound like you have thorough dr's….where are you state city wise??if l may ask terri and tdrell

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@tdrell
I'm in Minnesota
It was a regular bronchoscope.
But my doctor checked off to check for a lot of different things.
Yes I think he didn't want to miss anything because of all my congestion lately.

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3 replies
Brenda R. | @brigby | Mar 26, 2019
In reply to @kpost2 "I have been diagnosed with Bronchiectasis from my Pulmonologist. I had a couple Bronchoscopies done. I..." + (show)
@kpost2

I have been diagnosed with Bronchiectasis from my Pulmonologist. I had a couple Bronchoscopies done.
I wear a shaker vest 2 times a day. I also get an Asthma shot every four weeks. I also get I.V. treatments
for my Bronchiectasis every four weeks also. Been doing this for about two years now and still have a continued
cough with mucus. I feel like a lab rat when ever I go to the doctors office. Also have been on lots and lots of Antibiotics.
Is there any other thing I can try?

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If you are able, add some postural drainage.

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1 reply
kpost2 | @kpost2 | Mar 29, 2019
In reply to @colleenyoung "Hi @kpost2, welcome to Connect. You'll notice that I have moved your message to an existing..." + (show)
@colleenyoung

Hi @kpost2, welcome to Connect. You'll notice that I have moved your message to an existing discussion about bronchiectasis in the MAC & Bronchiectasis group. If you click VIEW & REPLY in the email notification, you can scroll back through the past and recent posts.

I also invite you to explore all the discussions in the group. There is a wealth of information here: https://connect.mayoclinic.org/group/mac-bronchiectasis/tab/discussions/

For example, this discussion:
- Long-term Antibiotics for Bronchiectasis & MAC https://connect.mayoclinic.org/discussion/bronchiectasis-mac-antibiotics/
- Are Nebulized saline and Aerobika beneficial? https://connect.mayoclinic.org/discussion/are-nebulized-saline-and-aerobika-beneficial/

One thing you'll quickly notice is that you're not alone. I'd like to introduce to a few members like @windwalker @tdrell @irene5 @kjellis and others who understand your feeling like a lab rat and searching for treatment/management options in support of or as an alternate to long-term antibiotics.

KPost, do you use a nebulizer?

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nebulizer seemed to mess with my eyes. Had a hard time focusing. Was told to stop using it. Also it made my heart rate go
way up.

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1 reply
kpost2 | @kpost2 | Mar 29, 2019
In reply to @brigby "If you are able, add some postural drainage." + (show)
@brigby

If you are able, add some postural drainage.

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I do a neti pot every once in a while.

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kpost2 | @kpost2 | Mar 29, 2019
In reply to @pfists "@tdrell I'm in Minnesota It was a regular bronchoscope. But my doctor checked off to check..." + (show)
@pfists

@tdrell
I'm in Minnesota
It was a regular bronchoscope.
But my doctor checked off to check for a lot of different things.
Yes I think he didn't want to miss anything because of all my congestion lately.

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My lungs have a gurgle sound everytime I breathe and if I cough it seems to get rid of gurgle for a little bit.
I cough every day all day long.

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kpost2 | @kpost2 | Mar 29, 2019
In reply to @windwalker "@kpost2 Hi. What were you nebulizing that messed with your eyes?" + (show)
@windwalker

@kpost2 Hi. What were you nebulizing that messed with your eyes?

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It was Albuterol. Twice a day.

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1 reply
kpost2 | @kpost2 | Mar 29, 2019
In reply to @marilynk "What kind of I.V. Treatments do you get? I have Bronchiectasis also, plus Mac and I’m..." + (show)
@marilynk

What kind of I.V. Treatments do you get? I have Bronchiectasis also, plus Mac and I’m on the 3 oral meds plus nebulizer and vest. This is my second go round as I was originally diagnosed at NJ in 03.

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I get 300ml of Privigen every four weeks.

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1 reply
tdrell | @tdrell | Mar 30, 2019
In reply to @pfists "@tdrell I'm in Minnesota It was a regular bronchoscope. But my doctor checked off to check..." + (show)
@pfists

@tdrell
I'm in Minnesota
It was a regular bronchoscope.
But my doctor checked off to check for a lot of different things.
Yes I think he didn't want to miss anything because of all my congestion lately.

Jump to this post

@pfists...being in Minnesota...with Mayo nearby ...has it appears an influence over the thoroughness of medical care!!! Tdrell

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1 reply
Dee | @danielad | Mar 30, 2019

@tdrell; @kpost2; @brigby; @pfists; @marylink; @windwalker -- All: I have a light case of Bronchiectasis, discovered via an MRI at least 9 years ago. I suffered from continuous allergies, asthma, and sinus infections, also severe and frequent bronchitis. My test results were in the normal range, but I was not getting any better, so my Pulmonologist said -- "What if you have bronchiectasis?" I didn't even know what that was! But I found out in short order!

I would like to emphasize the following -- After being diagnosed, I searched for a Pulmonologist specialized in caring and managing Bronchiectasis and I found a superb one! I am now being followed by her, at a University Hospital near me. I also agreed to be on the "Bronchiectasis Register". I would encourage everyone to find a "Bronchiectasis" Specialist and get on the Register.

The benefits of being followed by a "Specialist" are obvious, not so those of getting on a "Register". Well, this is an opportunity to do "something" for others, because while getting on the Register may not help "you" (though it could), it will hopefully help others -- I can tell you that I derive a great sense of happiness from knowing that "my case" can contribute to helping others!

Management of my case is as follows: Mine is a light case; however, I still need to be treated with a strong antibiotic when I get any sort of upper respiratory infection; I use Albuterol (others have mentioned it), but have not had any issues from it. I only use it when I must. Also, I get all the vaccinations in a timely manner (flu, pneumonia, etc.); and avoid contact with people who may have the flu, or other contagious upper respiratory virus. I see my Pulmonologist every 6 months, and have a "Breathing Test" every year. So far, so good; sure hope to continue in this way.

Last, but not least -- I have "Latent Tuberculosis (TB)" -- So I REALLY want to stay healthy! In case anyone is wondering -- Latent TB is NOT contagious; it simply means that the virus is in my lung(s) and "may" become active IF my immune system became compromised by another health condition such as cancer. The same pulmonologist does NOT want me to take the "standard" prophylaxis used for Latent TB; she tells me that the "cure" is too dangerous after a certain age, thus unwarranted at this time.

Wish everyone good health!

-- Dee

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